UPDATE from September 26, 2019:

Thank you to all of you who shared our story, have donated COTA, and to those that filled out the living donor form. We are so overwhelmed by everyone’s love and support.

Adelina received her gift of life on July 17 from a living donor. Words can not express how grateful we are. We are so happy to see our little girl thrive.

Addie is home and recovering amazingly well. We are so very proud of her. So many people took part in saving our daughter’s life. Her team of doctors, the liver and living donor teams, nurses, hospital staff, the support of our family and friends, and of course the living donor, made this all possible. We have a long road ahead of us, but we are so looking forward to growing old and watching Addie live an extraordinary life.

Please consider donating to COTA in honor of Adelina. Transplant related costs add up because of constant follow up care, especially during this first year of recovery. Thank you in advance for your compassion and generosity.

#donatelife #savealife #organdonation #giftoflife #transplantawareness

July 3rd 2019
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Addie is 13 months old. When she was 3 months old, Addie was diagnosed with Alagille Syndrome, a rare genetic disorder that can affect multiple organs including the liver, heart, and kidneys. As a result of that, Addie has progressive liver disease. This disease has directly affected Addie’s growth and development, and has aggressively deteriorated her liver in the past several months. We can see her firm desire to walk, to do more than her body will allow her to do. It’s hard to reconcile with the Addie we love and admire daily- she is full of life, so funny and curious and smart, and, boy, does she love a party and a room full of people. When we celebrated her 1st birthday this past May, we glimpsed at a future full and bright. Mentally we saved seats at each milestone for Addie’s wonderful team of doctors, too. 

We are awaiting a life-saving liver transplant for Addie. We are grateful to have our insurance cover some of the medical-related transplant costs, yet there are many additional aspects of care and recovery costs that won’t be covered. Transplant related expenses, especially during the first year, are astronomical. 

We have partnered with COTA to fundraise for transplant-related expenses. Please consider donating to COTA in honor of Adelina. Her will to live and fight through this with the biggest smile on her face is an inspiration to all around her. Thank you in advance for your compassion and generosity.

#LiverforAddie #LifeforAddie